Piecing it together

Well, this has certainly been a strange year for me and weird medical problems (may I remind you of my one week of temporary paralysis, following a chiropractor visit back in May).

It turns out that, apparently, my last post announcing that I’d been diagnosed with mast cell activation syndrome may have been a bit premature.

For some reason, during my first visit with my new allergist at Beth Israel (one of the major medical centers in Boston), I’d gotten the impression that my diagnosis was absolute.

However, I’ve since met with her two other times, and apparently my clinical picture is not as clear-cut as it had seemed at the first visit.  (Or, perhaps I misunderstood something at that first visit when I was busy trying not to burst into tears).

Things are a bit more calm now for me, and I’m starting to piece a lot more of the facts together.

I thought I’d share them with you here.  Although I’m really upset that any of this happened, in a way I am proud of myself for the way I handled it.

As some of you know, part of what took me so long to recover from SI joint dysfunction was the fact that I didn’t believe in myself; didn’t believe that there were answers out there for me.

So when I got “I don’t know” for an answer from a doctor or a PT, I sort of internalized that as a reflection on me.   That I had a “weird” problem, one that no one else could understand.  So I’d let a lot of time go by after one thing failed, before trying something new.

I’ve learned from that experience, though, and now I am like a totally different person.

For now I will spare you the details of some of the indignities I’ve faced.  Other to say that, because some of my symptoms have been atypical and don’t necessarily fit the classic signs of an allergic emergency, people have been downright rude to me.  By this, I mean emergency room staff and even…. quite surprisingly, my new primary care doctor, who I had really liked.

But I stuck it out.  I had my regular allergist at a small local medical center near me who believed that something really was going on with me, but that it was a bit more than she had the tools to diagnose.  (That’s why she referred me to BI).

And the more I’ve met with specialists– the allergist and also two dermatologist, because a lot of my symptoms have involved strange rashes/hives/things going on with my skin– the more I’ve been affirmed.

The same spots the ER doctor told me were “nothing,” all three of the specialists confirmed to be hives.  It’s just that they can look different, on different people.

This has really just been such a brutal time.  I don’t understand why people would treat me with suspicion.  After all, it’s not like allergic reactions come with any fun drugs.  It’s not as if I’d gone in there asking for painkillers (although I would of course still be upset at being treated this way, and rightly so).

But allergies?  I don’t know.  I don’t get it.

Right now, though, I can’t control other people.  I can only control myself.

So right now I’m trying to take control of the situation as much as I can.

Part of the uncertainty, I realized, may come from the fact that there’s a disconnect between dermatology and allergy.

While I technically have “hives,” hives are not always a sign of a dangerous allergic reaction.  I’ve been learning that sometimes they can also be part of a much smaller chemical signalling pathway that has only to do with the skin.  So, while I may still have mast cell, it’s been a huge relief to know I don’t have to freak out every time I scratch an itch and end up with a hive (this is part of a non-dangerous condition called dermatographia).

So I’ll be going back this week, to dermatology and allergy.  I’m going to ask my doctors to communicate with each other about what they’ve found.

And maybe I don’t have mast cell activation syndrome.  It’s still too soon to say for sure.

But right now I am proud of myself because this time around, I’ve internalized nothing.

If those ER doctors don’t get it, well, forget them.

At least that’s the one good thing that’s come out of this, as well as my weird chiropractor paralysis episode.

A younger me would have thought there’s something wrong with me, for having problems other people don’t understand.

Now nothing slows me down.  When people dismiss me, I bounce back and fight harder.

The thing I was most embarrassed to write about

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Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.

However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.

I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.

I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.

But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone.  I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.

So, a big thank you to everyone who’s shared their story with me.  Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you.  It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.

In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.

 

While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.

I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.

But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.

Things I’m grateful for: people who are brave enough to tell the stories I’m not

I’ve just discovered Rachael Steil’s sharing of her story as an elite college runner with an eating disorder.

And I’ve really been blown away, both by her bravery in telling her story, as well as her clear and honest explanations of what she and other people with ED’s go through.

I still haven’t shared too much about my own past with an eating disorder– I started to touch upon it in this post— but really, I have a story that’s as long and complicated and intense as hers (minus the part about being an elite college runner– I had long been injured by then).

But I relate so much, to the concept of losing a little bit of weight, and finding it makes you faster, and so then wanting to lose a LOT more.

Of latching on to healthy, trendy “lifestyle” diets– in her case, the raw food diet– because ultimately, you know it’s giving you a way to hide the fact that you have a problem from other people.

And of the paranoia of thinking that if you overeat, even if just for one day, you’ll gain enough weight to slow you down and ruin your time in your next race.

I so, SO appreciated her story, and I can’t wait to read her book.

I think that, when talking about this kind of thing, it’s really important to strike the right balance between sharing the some of the scary aspects of what you went through, while also reassuring people that you eventually found a way out.  That’s one thing that’s held me back from telling my story more– I want to be sure I do it right.

I think Rachael has managed to strike that right balance, so the way she tells her story is really an inspiration for me.

Hope you check it out!

Rachael’s website

Youtube channel, with many more great videos

Her book Running in Silence

 

The doctor who *almost* helped me (How I developed central sensitization, Part 6)

Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong.  It’s not really necessary to the story, and I don’t want you to get bogged down in negativity.  The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist.  Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else.  Their approach is generally thought to be more holistic.  They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well.  It’s a pretty cool specialty.

And I was pretty much seeing the best one.  I loved Dr. V. the first time I saw her.  She’d won all kinds of awards for going above and beyond to help her patients.  And she was just so… nice.  She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.”  My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long.  I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed.  I just needed a place to go where someone could tell me whether or not I had an injury or not.  I didn’t always need to be referred to physical therapy, or start some new treatment.  Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it.  (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy.  She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years.  I would go and see them, but nothing ever really “clicked.”  Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain.  As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive.  It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured.  This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself.  A new part of my body would hurt (or an old one would start hurting again) and it would feel real.  It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V.  To be examined by an actual doctor and be told nothing was wrong.  It helped my nervous system feel “safe” again.  Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended.  Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my body.  The pain would be able to fade into the background.

And I was okay with this pattern.  It wasn’t ideal, but it was better than anything I’d found yet.  We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing.  I was okay with the holding pattern, but Dr. V. was not.  Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes.  And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment.  I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed.  Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day.  That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me.  And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that.  I started to cry and attempted to explain myself, but it didn’t matter.  Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment.   Her secretary, who I’d sort of become friends with, overheard the whole thing and poked her head into the room, gently reminding Dr. V. that my appointment was actually supposed to be for a whole hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference.  It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels.  This is why I like to remind people that central sensitization was actually discovered in rats.  It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist.  A lot of people are like that, actually.  They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her.  I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses.  It was #1: central sensitization.

That whole time– she could have just told me the name for it.  I didn’t even know there was one.  I could have learned about it myself– I could have Googled it.  It was discovered in 1983.  There was more information out there than I was given.

But no.  Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking.  I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what?  I think I’m sort of proud of myself for getting as far as I did, on my own.  After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson.  This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works.  It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!

Hope this was helpful!

How I developed central sensitization: Part 3

Okay, I still can’t believe I’m writing about this part of my story publicly.  But it seems like I’ve reached the point in my life where my need to say something is beginning to outweigh my fear.  So here we go:

***

I was 21.

I’d finally had leg surgery, which had successfully cured my compartment syndrome.  And now I’d just stopped needing to take painkillers for my back.  I’d completed three semesters of college, and I was excited to keep moving forward and try to live a normal life.

These posts have been pretty heavy so far, so I want to take a moment and actually reassure you that this was a really positive time in my life.  I loved my new school, and my new friends, and I loved what I was studying.  I was completely at home in the socially conscious, hippie atmosphere of Western MA–  I felt as though I was finally where I was meant to be.

But something had changed within my body.  Even though I no longer had a major injury, it seemed like every little thing I did could set off some kind of pain.

I’d open a heavy door, and my elbow would hurt afterwards, for days.

I’d do a lot of typing, and my wrists would burn so intensely that I’d start wondering if I had carpal tunnel.

I tried to get back into running, but the first time I reached a good speed, I developed a stabbing pain underneath my right shoulder blade and had to back off.

At the time, I’d had no idea this could have anything to do with the way my nervous system was functioning.  It just seemed like my body had changed; like it wasn’t able to heal from things anymore.

I actually started to wonder if there was something fundamentally wrong, deep in my tissues, and now I was somehow prone to getting injured really easily.  It seemed like every little thing I did created more pain.

***

I didn’t like this new body, and I wanted my old body back.

I remembered what it was like, before my surgery and this whole episode with “glass back syndrome”– before pain had encapsulated my whole body.

I’d had other injuries before, of course– shin splints, as well as a partial tear of my hip flexor tendon during my freshman year of high school.   But what had made these injuries different is the pain always stayed in one place, and when the injury had healed, I was strong.

Now my body was profoundly different.  I felt like it couldn’t withstand anything; couldn’t stand up to life.  Every little thing made me feel like something was broken, or that I was “injured.”

If I opened a door wrong, or carried something heavy, or went for a walk when it was super cold out— every little thing I did seemed to create a “micro-injury.”  I’d have pain, or pins and needles, or some other weird symptom, and feel like I couldn’t use that part of my body for days.

My once powerful body, that had carried me up hills, and down rocky slopes– the body that made half of the girls on my cross-country team hate me, because I was always #1– somehow, right as the rest of my life was starting to get back on track, it had turned to glass.

To be continued in Part 4.

To start from the beginning of this series: